Even those who have high-risk conditions that should lead to celiac disease testing face long delays, analysis of health insurance claims reveals
By Amy Ratner, director of scientific affairs
Even those who have high-risk conditions for celiac disease face long delays in getting diagnosed, according to a study by Weil Cornell Medicine and Beyond Celiac published recently in the Journal of Clinical Medicine.
Analysis of private payer health insurance claims from 2007 to 2022 revealed “persistent delays in celiac disease diagnosis across the United States, supporting the need for renewed efforts to close diagnostic gaps, especially among underserved and vulnerable populations,” the study concludes.
It calls for targeted strategies, including education of healthcare providers and increased access to specialty care. Additionally, universal testing for celiac disease could help address ongoing disparities in diagnosis, the study says.
The journal in which the study was published reaches doctors, nurses and other healthcare professionals who want to stay current on the latest research in patient care. They are a prime audience where education about celiac disease testing is critical.
The delays in diagnosis show that healthcare providers are not consistently following major medical societies’ recommendations for celiac disease testing among people with high-risk conditions, the study found. It included about 9400 people with celiac disease who had high risk conditions preceding their diagnosis.
The data analysis showed that the average time to diagnosis was about three years, with some delayed as long as 15 years.
The time to diagnosis was longer in women compared to men; older adults compared to younger adults and children; and non-white people compared to non-Hispanic white people. Those who live in the South had a longer time to diagnosis than those in the Northeast and Midwest.
Older adults had the longest delay in diagnosis, an average of about nine months longer compared to younger adults. This may be because gastrointestinal symptoms aren’t always found in older adults and symptoms that are not gastrointestinal, such as anemia or osteoporosis, may be blamed on aging itself or other chronic conditions found in older people, the authors suggest.
Additionally, older adults may be less likely to have an endoscopy and biopsy, which are usually needed for a celiac disease diagnosis. The endoscopy might not be done due to other conditions that make the procedure potentially harmful. Lack of a biopsy also suggests doctors are not considering celiac disease in older people, the study says.
“The increasing incidence of celiac disease in older adults, coupled with the long time to diagnosis in our study, highlights that special attention to the older adult population with celiac disease is imperative,” the authors wrote.
While celiac disease is more commonly diagnosed in women than men, women have a longer delay getting diagnosed, the study found, with women taking about four months longer than men. Women may be more likely to have their symptoms attributed to other conditions including irritable bowel syndrome.
A delay in diagnosis of other gastrointestinal diseases has also been found in other studies, perhaps partly driven by the tendency to dismiss women’s health complaints, the study says. It calls for further research to understand celiac disease diagnosis delays in women.
Hispanic patients waited about four months longer for celiac disease diagnosis compared to non-Hispanic whites, the data analysis showed. Hispanic and Black people with conditions that should lead to testing had average delays of about 38 and 36 months, respectively. White people had an average delay of about 34 months.
“This could be due to misconceptions and under-recognition of celiac disease in non-white patients,” the authors wrote, noting that communication barriers and lower rates of endoscopies being performed in US Hispanic and Black populations may also contribute.
“Our findings raise questions about systemic or access-related barriers that may disproportionately affect Hispanic individuals with celiac disease,” the study says.
Meanwhile regional differences may be explained by easier access to celiac disease specialty centers more frequently located in the Northeast, which has four, than other areas of the United States.
High-risk conditions that should lead to testing for celiac disease were identified in celiac disease diagnosis guidelines from professional gastroenterological associations for adults and children.
They include intestinal symptoms such as abdominal pain, diarrhea, constipation and malabsorption. Also included are symptoms such as failure to thrive, iron deficiency anemia, mouth ulcers, ataxia, peripheral neuropathy and unexplained weight loss.
Other conditions related to celiac disease that should warrant testing are autoimmune thyroid disease, dermatitis herpetiformis, Down syndrome, irritable bowel syndrome, Type 1 diabetes and Turner syndrome. Family history of celiac disease and, in children, failure to thrive should also lead to testing.
The most common high-risk conditions found in the analysis were recurrent abdominal pain, in about 75 percent of those diagnosed with celiac disease, and chronic diarrhea, affecting about 62 percent.
The study was based on 15 years of US private payer health insurance claims. The time to celiac disease diagnosis was calculated from the time a high-risk condition was found in the claims to the time celiac disease was confirmed by a biopsy.
Hayley Zylberberg, MD, of Weil Cornell Medicine was lead author on the journal publication, joined by her colleagues at Cornell, Deirdre Reidy, MD, and Carolyn Newberry, MD, and Beyond Celiac science team members, Erin Miller, MPH, Kate Avery, MPH, Amy Ratner and Debra Silberg, MD.
Preliminary findings from the data analysis were presented as a poster earlier this year at Digestive Disease Week. The study was selected as a Poster of Distinction.
Strengths of the study include use of medical data from a large, nationwide sample that includes a diversity of ages and races over a 15-year period. This allows for a comprehensive assessment of patterns of diagnosis across the United States.
Study limitations include the absence of health data from those who are uninsured or covered by public healthcare programs. Also, socioeconomic data was not included, which may influence time to diagnosis and needs further study.
The authors note that overall differences in time to diagnosis between some groups are relatively small, which may limit the significance of the findings related to patient care.
Takeda Pharmaceutical Company Limited funded the research through an unrestricted grant.
You can read more about the study here.
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